Literally sobbing whilst watching this, this disease is cruel, it's taken so much from me and my family. But I wont let it take my whole life. My message to other sufferers is that you aren't alone. Don't suffer in silence, there is support our there, finding a fellow CRPS warrior can help, talking to someone who truely gets it, is life changing 🧡
I've been a warrior for myself during years of this painful and misunderstood disorder and have found no support groups. Through the pandemic look at what's left of our health care. The whole system is so degraded under impossible pressure and greedy corporate thinking. That's what gets hammered into me every time I seek the real care I need. It's tough luck. Things have changed. Maybe if I were wealthy. I'm not. I am receiving the message that I'm expendable loud and clear. Medical professionals aren't too happy either. Most really want to help people. It's not set up that way anymore. Heck. Medicare doesn't even cover some of the prescription treatments that help. The stress of this broken system adds to the pain.
Thankyou.. after 8 months the pain wore me down to the point, I gave up.... I started planning how to end my life. It didn't matter what opoid or drug they gave me,,, nothing stopped the extreme mid-back stabbing pain .... I couldn't stand or sit for 5 minutes. Because it was a workplace injury "Saskatchewan WCB" did everything possible to minimize the injuries I suffered at work ... Doctor #4..... 1 week after workplace injury finally ordered a x-ray.. The radiologist opinioned.. "It is possible the sacrum and coccyx are fractured however this is "Debatable" and further radiolographic followup will not be necessary. - My physicians repeated requests for expedited specialist appointment to WCB was repeatedly denied. Almost 2 yrs. after workplace injury my broken back was finally diagnosed, this was followed by a Retired Neurosurgeon under contract to WCB. "Multiple recommendations he opinioned were denied after WCB wrote to the doctor with "Falsified Medical Information" which saw the Neurosurgeon rewrite his 4 page report to a 1 page report. "Then WCB "Terminated" the claim, said I didn't have a job to go back to and issued 4 weeks job search benefits. This was deliberately done, so there wouldn't be a graduated return to work, and when problems were encountered, WCB wouldn't have to investigate. I returned to my employer and when problems started WCB "Blatantly Refused request for expedited Specialist Appointment + MRI...
I am so glad I watched this video it has given me relief I am not crazy 😏😓😞 the pain is unreal at times I have been dealing with this by myself for 3yrs. It's a very lonely disease because no one believe you
I am sorry:(, no you are Not crazy and Yes your experience of pain matters and you deserve proper treatment with pain controlled! It's hard to find Dr.s that listen, I went through years of not being believed when they could not find cause through standard blood test and xrays, but it was 2 rare genetic disorder all along! Keep fighting and know you don't have to fight alone, their are many groups, advocates and other patients that really care what happens to one of our own especially in these times where so many are not getting the Medical attention they need we have to stick up for eachother:) I am at The Insufferable Movement on Facebook if I can be any support:) Lindsay
@@Scatpatoulouful Same here, Mathieu. Same side ankle is what sparked in for me from an injury years ago. Now, it's traveled into other areas of my body and caused even greater issues. I send all of you Healing Blessings as we look to find a cure.
One of the painful things of RSD if it is very bad (I have it from head to toe and have been sick for 17 yrs) is not being able to work. I worked till the pain no longer allowed me to work. A working day would keep me in bed for 4'or 5'days. It got worst. It is at a point that the pain hasn't allowed me to move from my house. I have only been able to leave my house about 5 times in 4 years. Most friends get annoyed or don't have the patience to stick around someone which is sick and can't go out or will cancel visits because of the pain. I have also lost family which think I am not kind when I can't see them. I am so tired, I am exhausted of fighting a fight which I see as hopeless. I am praying for a medical breakthrough. I thank my mother, wife, aunt and my kind father which dedicated his whole life to fighting for me.
@@utopiaria1514 I just saw your message, thank you for writing. My Rsd / Crps has covered practica.ly all of my body from my eyes to my toes. The good news is I am a little better. After 10 yrs I was able to spend Christmas with my family. I was also able to travel and get a physical. Getting to the airport was impossible and exhausting. What have I done? Exercise! Firsti srtarted to stretch fi gers and toes so I would recover flexibility and then strength. The whole point is that exercise should be done till a point that it makes you tired but not to the point it takes you out of action for weeks. So you have to listen to your body. Some days you can do more some days less, some days you have a crisis and all your progress goes down in flames and you start virtually from 0. The good thing is that every time you will recuperate faster especially as you develop muscle. It is not that the red goes away but you have a stronger body and mind to cope with pain, so it becomes more managable. After that I started trying to stand on my toes holding a chair. Three second reps 2 0r 3 reps. After a while I had calf muscles. I started walking 2 minutes per day. That would put me to sleep an hour or two. After some time I was doing 15 mins. Today I walk 3 hrs per day. Physical resistance and muscle development will help you a lot and will help you endure pain enter. After more than 30 drs and expensive treatments this is what has worked best. Besides one girl I met in Tampa no person I have ever met has had a worse red than me. I seriously thought about ending things many times. It was so painful. Mygoal is goingback to work nextyear.
More of us need to get this out and the government must help us. Too many years without help that I went thru going from one doc to the other. I knew I was not crazy or that it was just in my head. I had it over 20 years before I got to the right doctor. I was the one who thought I had RSD and I did.
Thank you for this video. My crps diagnosis came quickly, however, I haven't had access to real treatment for it. I struggle everyday with high pain, depression and more... I've lost my career, home, and independence this last 2 years since mine developed. It's nice to find videos like this, with simple language, to be able to share with others in hopes of bringing awareness. I hope and pray that a cure is found one day..
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I’ve had RSD for over 20 years it was in remission for the last 10 years but just started up again. I wasn’t sure what took it out of remission but my heart doctor asked me if I had hurt my back recently and that’s what started it again I had pulled my back out 2 weeks before the pain started again. So glad that this is on ytube now. Thank you for sharing 😢
It's crazy, I'm 77 years old and have had crps in both feet and lower legs for 3 years now, just horrible. It started within 24 hours after receiving novicane shots to both knees. My toes started turning bright pink and burning. Today I can hardly manage to walk and I'm in misery every waking moment. My heart and my prayers are for all of us with crps-rsd
I have CRPS in my right side down into my foot into my toes, it can be very painful for walking, just getting around, I live each day one day at a time.
I have had CRPS for fifteen years, it started with a fracture in my right foot. Now I have in both feet, and legs 24 / 7 which makes walking not only extremely painful but difficult.
Four years I’ve had CRPs. It started in my right foot then went into my ankle. Now it’s in both feet and ankles and going up my leg. I recently developed drop foot. There wasn’t any trauma that caused it. My dr and PT both believe CRPs is the cause as my right foot has been turning in for the past two years. I now wear a special made brace to keep my foot up. Bc without it the toe of my shoe drags and trips me, makes me fall. No one with CRPs needs to be falling. So, if you are having trouble with your CRPs foot/feet being pulled out or in. Please get into you Dr. Physical therapy can help. I now do pt everyday and I’ll for the rest of my life….. but oh the next day the pain is, well you know, awful X100. I hope and pray all of you out there will heed the direction of your dr. Be proactive, and do not just sit around. That’s detrimental.
Hi my name is Susan and I have CRPS, I have had it for 17 years, Pain is so bad I can not even say how bad it is because it is off the charts, the swelling is so bad, in my right foot including my toes, its just miserable, actually it is beyond miserable way beyond that. Past 17 years have been totally a nightmare for me, I lost my husband and I have CRPS it is a rough ride but I live everyday best I can and I try hard to take care of my self and try not to complain but it is hard not too when ur in a lot of pain and the swelling is so bad. I have a Pain Specialist I do see he says that he would trade places with me, I ask him one day so why don't you?? he of course laughed and got and walked out of the exam room. I just do what I need to do to live with this each and everyday.
Thank you for this video. If only one more person is educated to either understand what they do have or helps one loved one to understand just a little bit more how hard a person with CRPS is trying not to make your life different just because theirs is now different forever. If people can understand, IF DOCTORS will understand that those of us who are suffering with CRPS would do anything and I mean anything to go back to the day before we knew we had CRPS and live that day over again we'd pay anything! Please family and friends of those with CRPS, please try and understand that we don't want to be sick, we are and almost as bad as the pain we feel is the pain we know we are inflicting on others. Please be patient and please know that we understand that you really can't totally understand...that's OK if we both try things will workout!
I thought I was the only person with this disorder because my docters were so puzzled as to what was wrong with me, I no longer feel alone in this journey
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I've been dealing with this for four years, been to many Drs, 99% of them made me feel like I was crazy or "it's all in your head". I've had a severe burn and that's what it feels like. Like my foot/leg is in a fire. I finally have a great Dr who actually cares. I don't feel alone anymore.
I've had this for several years. B4 my injury i could do the splits n crazy martialarts. This has taken my, near action figure body. And so much more. When the berametric pressure fluctuates, I'm bedridden. Best wishes to all who suffer from crps n props to the ppl reading n watching this content who are trying to understand what a loved 1 is going thru.
"It's just the little things"... I truly THANK YOU for this video for 2 reasons...#1 to remind us who deal with this disease that we are not ALONE!! #2 The more the general public can become aware & understand how this disease truly effects all aspects of life (my kids were 5 & 2 yrs old when my whole life changed)and it is devastating not being able to be the Mom I wanted to be & thought I could have been (as well as the wife I once was) I think it will make just one "little thing" fe a little bit better for those of us who suffer (you do have to be grateful for any & all the little things) For me it's not about wanting/needing their sympathy but just some patience and understanding can go a long way. Keep your heads up and be proud of who you are and any "little things" you have and create.
thankyou for this video I suffer with fullbody rsd/crps for 13 long long time I was told 10 years later I had fullbody rsd I know how you all suffer and iv cryed with you and yes its a huge shift for your life and your familys as well .its very painfull and I hope we have a cure soon.all drs should be aware of this now and send you to someone who can help and not assume its in our heads and for some of us it really is severe burning pain .keep going till you find the right dr who will help you.I think about all of you so please fight and fight hard for your rights and your rsd.
Hang in there my fellow pain sufferers! You are loved and cherished! Jesus loves you! He saved me from suicide from this disease years ago, gave me hope and strength
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
My husband has CRPS and this cream called neuropathy maximum strength help take away most of his pain. You can buy it on Amazon for $25 and it's in a purple and white jar. It's natural and it's the only thing that help him. The gabapentin did nothing for him. Hope this helps, have a blessed day ❣️.
@@florencedonald6419 You need to be taken out. I'm going to make it my business to do that. If I ever see you again on TH-cam I'll find you and deal with y. I have the resources.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
Thank you Kaitlyn I have had RSD/CRPS since 1/2003 I have it on all 4 quadrants and the back of my neck. Very hypersensitive. Burning off the charts to this day. My two kids were young too. And Your story reminded me of me and how I felt exactly. I was in my early 30s and everything I was doing, or going to do. No more 😢. What kept me going through those ups and downs was my faith, my family.
I deal with this in so many ways that I have to use a walker every place I go it is hard but keeping myself going through God's help. My prayers are with you all one day you will be healed keep the faith you will be healed through the Lord..
My grown Son is going through this too! He is so courageous! He and his wife have 3 children and he does his utmost to raise his children with a very supportive wife in the understanding that pain will not stop him from living!
This is a short video, but it explains what I have and will be going through most likely for the rest of my life. This is an amazing video to share with everyone who is a part of your life.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
Use running hot water and liquid soap. Heat the area well with the water and massage gently manually. Dry off the area halfway and do a second massage with a good cream or lotion. I do this before I go to bed and it dials down the pain so I can get to sleep.
I have been with RSD CRPS OVER 20years find a Doctor that knows RSD CRPS. Group therapy will HELP very much. we all have a different HURT and PAIN LEVEL. Please live does go on👌😳😍
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
Took me 18 years to be diagnosed and of course there were tears but it was tears of relief that I finally knew what was happening and that maybe I could find help. Now it's a struggle to find a doctor willing to treat me.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I was diagnosed in 1999 and was so fortunate that my doctor had just read about this new disorder, RSD, and I was diagnosed in only about 6 weeks. My original injury was a dog bite where my median and ulna nerves were crushed and severed, they ripped one muscle in half. My symptoms occurred shortly after my surgery to repair my arm. I understand I was so fortunate. I have a pain pump, and still take oral pain medication, my day to day life stopped. I had to reinvent myself. It has interfered with my relationship with my daughters, and other family members, I stopped dating, I lost most of my friends. But thanks to my BFF, she has stood beside me and never wavered in our friendship. Now, 21years after it started in my left arm, I am now having issues in my right lower leg and foot. We are watching it carefully to see what develops,
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
My daughter had CRPS for 7 months before we found something that worked I found a dr in Dallas that used scrambler therapy and now we have one in Shreveport La. She has her life back and able to go back to school as a jr in college. Unfortunately it is not covered by insurance but it was worth every penny we spent to get her back walking again
Praise Logic that I got the reference before mine got too bad. After a podiatrist appointment following a car accident, he referred me immediately for CRPS treatment. I had the stabbing pains and all the other issues, but he was adamant in getting me the proper treatment. I've been in remission for 3 years. I do have chronic, non CRPS pain from the other injuries, but no signs of it coming back so far. Access to proper treatment, which is actually very cheap to do when you catch it early, is the key. I was supremely lucky that mine was pegged at 2 weeks after the injury due to my flushing reactions.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I was hit by a car walking and got a ankle fracture and for years nobody could tell me for years why it’s very depressing finally my neurologist finally diagnosed me with CPRS. I was down when he said there’s no surgery to fix it. He has me on lyrica and gapapentin
Mine was initially diagnosed as degenerative arthritis but it took my foot dr sending me to an orthopedic surgeon in Grand Rapids it took him one year after I first saw him to diagnose it. The color changed in my feet and ankles that and the constant pain got him to realize that's what it was. The fight at age 24 is becoming more difficult. As the winter approaches I feel worse.
4 1/2 years struggling with this horrific disease, started in right foot in response to a torn knee meniscus...it slowly and painfully overtook my foot, moved up my leg into my damaged knee, infected knee bones,( one Dr. pointed out on x-rays), and no one would do the knee replacement needed. Following another shoulder injury,(glenoid labrum started tearing out, again no Dr. would bother with it...it finally tore out from the 12 oclock to 8 oclock span..a real mess....AND it gave this RSD a chance to migrate through my body, as if it was "hunting" places to spread to...and it did..I cannot describe this burning, like hot knives stuck in the base of my neck...down the injured arm into left hand...it's overwhelming, and when mixed with other injuries, it becomes catastrophic in nature...a monster of torture. If you don't have some kind of faith in God, (btw, don't blame God.) cry out, learn to pray. You don't have to become a religous person, nor will you not have the tendency to let some cuss words fly out. Thanks to all of you who post here. You are in my prayers.Please keep going, don't give up, don't end your life, you have great value, no matter what your mind thinks from time to time..there is a saviour named Jesus who loves you....just believe, talk to Him..the rest will work out.
CRPS is the worst thing ever, and then you have to deal with people saying your faking it, makes it even worse. Just imagine going to sleep with the worst pain you've ever felt, and waking up and it still there day after day
I personally feel like saying crps is "chronic pain" puts it in the wrong category. It's a dysregulation of the nervous system which produces chronic pain but so many other co conditions that it is so much more than "pain". Honestly....it needs to be reclassified. We warriors deserve people to understand the truth of what we go through on a daily basis!!
I'm a former nursing manager, diagnosed with CRPS in 1999 following a sleigh riding accident where my thumb was torn. The hand surgeon waited for 4 days before doing the necessary repair. Meanwhile excruciating, burning pain became unbearable. Six weeks into PT the therapist mentioned she believed I had CRPS. As a nurse, I hadn't heard of this. My orthopedic hand surgeon was seemingly clueless. My PCP took one look at my thumb/hand & was horrified - he knew immediately it was CRPS (called RSD then.) Confirmed by neurologist. It's been a long arduous journey complicated by pain management who played guinea pig with my care. Previously healthy, he had me taking 24 different medications before I finally put a stop to the insanity. I had more nerve blocks than could count. Had SCS implanted followed by serious spinal fluid leak. With the help of my PCP, I weaned myself off all but 5 needed for my now diagnosed hypertension, pre-diabetes, narcolepsy & one (maintainence) pain med. Aqua therapy enabled me to handle the weaning off process. I use relaxation music & occasional edibles to sleep. My biggest concern - the medical community is still overwhelmingly unaware of CRPS. Many specialist physicians in the metropolitan area are uninformed & have never dealt with CRPS. This unintentional ignorance must change. My daughter is a PGY2 ENT Head-Neck Surgery Resident & grew up dealing with my condition so she's been well informed. Her husband, a PGY2 Family Medicine resident physician was not formally educated about CRPS but is aware from his 10 year relationship with my daughter. I have printed out information sheets & give them to any physicians I see. Medical schools & nursing schools must include this in their curriculum. The incidence of CRPS has grown- it's been found to affect many of our veterans who have been in combat. My military officer son- a Black Hawk pilot instructor & ALS Paramedic was able to help diagnose several cases during deployment in Afghanistan. Education is critical for all medical professionals-for early diagnosis & treatment.
This is sad just imagine how quick pain goes away but while you feel it an instant can feel like forever this would be horrible to live with I hope they create a cure
I really liked this, but when rewatching to decide if it plead one to even think about sharing with my family, my friends, it greatly minimizes the disease and the reaction and full impact on my life that would give them any reason to take me setiously finally. would like this more of share it if it wasn’t another thing that would leave everyone on such a positive note on oh, see you are just in some pain, see they said have one cry… go on, change you life a little. It touched me so much at first, but doesn’t even highlight the true reality of my life. I’m in a wheelchair, losing the blood flood, as it spreads to my body. I am going on, but this will let people cobra us to say, get well soon. You are strong. You are resilient. It’s okay- pat pat. They will watch and feel there is no validity for me to file for SSDI, cry more than once, or continue down this very serious snd horrific disease. For right now, if I had that much pain, it could only be understood if I was curled up in a ball screaming constantly, so there is the prof they need that it’s not worse than childbirth, because you see the screaming, cussing in movies and tv and then life is born. You have sympathy for amputees and especially the veterans. But you see me in my wheelchair, looking normal, yet no emotion, tired, if I smile -watch out- I’m perfectly happy and the RSD is gone. If I use my rollator, I’m healed. Early diagnosis- what a joke. I had that from top doctors, not enough, let’s add 5 more and a neurosurgeon, but is that enough, jury is still out and my PT keeps being denied. Ha. One office visit. No pain management doctor would ever take that seriously. It’s too rare. Not enough times to have everyone there could be rule out every thing else. Any other reason for the edema, decided that your issues shouldn’t be surgically corrected. They are minor. I’ve had about 20 MRIs and at least 10 other types of testing. Only had OT right now.
😢😢😢😢😢i cried threw this hole video knowing now there are people put there that have what i have and all these years i just kept hoping and praying 😢the
I’m only 13 and developed full body crps and many other chronic illnesses from a tumor on my spine formed from a gymnastics accident. The an excruciating amount of pain every second is debilitating. It’s unlike every other pain I faced from surgeries and broken bones and spinal procedures and cyst like tumor growing in my spinal cord. It’s draining and it is taking a toll on the amount of time I have to live my childhood like a normal kid.
My Husband was diagnosed in 2015 with CRPS after a knee replacement that went terribly wrong! The last few years since we researched everything. Ended up seeing a Dr at Kaiser Permanente Hospital in Redwood City California. He under went a procedure to have a spinal cord stimulator implanted in his spine. He has to charge like a phone , but it does help! He also goes in for Ketamine infusions 3 times a year at that same hospital . It helps .. such a horrible condition , it has changed both our lives!!
I was diagnosed with CRPS yesterday it only took 2 moths but that is because I pushed for an early appointments with each doctor as felt like I was being ignored by them ( each appointment was 2 months away) I ended up in A&E 3 times and every time I felt that I was making it all up even though you could see the swelling, the change in colour ( red ) or that I couldn’t move my foot. I was put on pregabalin yesterday and for the first time in 2 months I was able to sleep. My Journey has only just start but I now knew what I have. Thank you for putting this video up.
We're here for you Tammy. Let us know if you need anything else from us. Feel free to follow us on our other social channels to meet the rest of the community and send us a email at info@rsds.org with any questions.
@@RSDSA thank you for your response yesterday and last night have been really bad that I have had no sleep and been crying most of the night. I've now got pain in my right leg which is making it hard to stand on. I'm on couches and cannot put any weight on my left foot. I've also been made homeless as cannon work and now wanting on the council to see if CRPS I a condition that requires me for 're housing so now the stress is even more. The interview could see how much pain I was in but because CRPS is so unheard of no one knows how to deal with someone who has it. I'm hoping my doctors can help as do need help with everyday living as I'm only in the early stages of treatment. Once again thank you for your response. Kind regards Tammy x
I’m 13 and I have crps in my right leg left knee and left wrist, I’ve had so many doctors tell me it’s all in my head untill I went to royal Manchester children’s hospital they support me and help me get through it and hopefully get better
The orthopedic surgeon who operated on my wrist: "You have to see a pain management doc" The neurologist who was treating my through-the-roof-migraines as a result of my CRPS: "No, you have to see a physiatrist". My PT: "No, see a pain management doc" (was she afraid the physiatrist would take me away as a client?) PS- And no, I didn't "cry" when I got the diagnosis; I thought, man, this whole "syndrome" thing sounds way too fishy for words, frankly: it's this, it's that, it's everything; there's no parameters. It's like some vintage documentary: CRPS: THE EARLY DAYS
My story is similar to the lady in green! I wish I had been able to have her attitude when I was finally diagnosed with it!! I have spent the last 5 years not knowing from day to day how I’m going to feel when I wake up!! I did isolate myself from the outside world because everyone kept telling me that I just needed to get back to work and quit using it as an excuse!! I’ve been seeing a counselor for over a year now and I still have really bad days!! My accident happened because of a dog and I have PTSD so bad that I can’t be around dogs even if I know them!!
Thank you for this video ! I have it in my right foot and the pain is so intense, I get thoughts of just cutting my foot off because the pain is so bad. 😔😔😔...
@happy days, my wife too has CRPS in her right foot. She had to have her pinky toe amputated due to deformity from the severe neuropathy and you know what....it just moves to someplace else or further up the extremity. We did not have the amputation to get rid of the affected part. She was unable to wear a shoe due to the severe contracture upward, pain and inability to walk properly. We are in Italy for our 2nd round of Neridronate infusions. The first round a year ago worked well but the subsequent surgery brought back some of the symptoms. In consultation with our Italian doctor, he felt one more dose would put her back into remission. We also do nutritional supplements. Please try Normast. It can be ordered online and has really helped with pain and burning. We also do cognitive and brain exercise and balance skills. Happy days, you need to be your best healthcare advocate and research and talk with others and find the treatment that works for you. So cutting off limbs is not so much a good treatment 🙁
Yes, it's invisible in most ways. But you just have to know it yourself. Find caring practitioners and someone who deals with targeting the autonomic nervous system. Notice what makes it feel better or feel some relief. All the best to you!
I had a considerable short diagnosis time 2 1/2 years from injury that caused the CRPS. But it was that time that Drs broke my spirit. They said that the pain was all in my head and that I was just acting in the way I was due to pain because I "wanted attention". I tried to kill myself twice during that time and I was in quite a dark place that no one should go through. There is a reason why CRPS has a nickname of the suicide disease. It's because when a person goes for a long enough time of unrelenting pain they are done with the pain, done with people assuming that they are crazy and just done with life. I am grateful that I've found a Dr that has agreed to place me on methadone as it seems to work the best out of everything I've tried without impacting my thinking too much.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I must have gotten unbelievably lucky with the first doctor I went to see. My leg is the center of my pain. Goes from ice cold to hotter than the fires of hell. I thought at first I had a DVT. An emergency to be sure. So, I went to the hospital. Had an ultrasound done and no clot. A neurologist came to see me and did a quick nerve conductivity test and my sympathetic nervous system failed miserably. He then told me he's only had 1 other patient that ever had such poor results from that test and they had CRPS. I've suffering through the pain for 12 years. I so far have refused to take opioids. I don't think that's going to be an option for much longer though. The pain is spreading into my spine and further down my leg and now into my other leg. Honestly, I've considered taking the easy way out.
I don’t know if it would help others but I have had some success with using magnesium oil (magnesium chloride) topically and magnesium tablets internally. I fell down stairs 1 year ago and have been diagnosed with CRPS. My pain is from knees to toes. This has dampened the pain for me. I have also added more vit B complex and breathing exercises.
I was diagnosed in 2011. Due to nerve damage when I had back surgery. It's not fun. I hated myself, it had altered my life w my husband and grandkids. For the most part, pain is under control not gone. Numb along the track of my S1 nerve. I now hurts to use the bathroom. Sends pain down my leg. I now has a lot of leg cramps, and stabbing pain in my Achilles. I had been on lyrica (hated it) it alter me from who I was. I hated everyone and the world I was in. I have been on cymbalta and gabapentin since 2012 max dose in 2014. It took me years for me to be able to touch my own foot. I hated the pain. I rub it daily so my brain would understand it's ok. My Dr. Now wants to do a spinal cord stimulator. Not sure I want to do another surgery. He understands that.
Debbie, have you investigated low-dose naltrexone? It is a compounded medicine which reduces the microglia activation in CRPS. If you email me at info@rsds.org, I can send you information
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I have not been diagnosed but have had this pain for 2 years since the first surgery on my left ankle. I can't take it anymore. There is no relief and I can not get away from it. I don't know what to do.
Go to the University of South Carolina...you WILL get a diagnosis there. And the sooner you get the diagnosis, you can file for total Disability Don't wait until it is too late. My daughter has CRPS, no diagnosis for 7 years; therefore, it was too late for her to get on disability. Don't settle for anything but a true diagnosis..Google to find doctors who treat this disease.. God bless all of you who suffer with this disease. CRPS pain level is up to 40 on the pain scale..
6 years Started from left arm having all flesh ans muscles torn off. Has moved to both feet and legs. Left is so bad that skin splits and oozes fluid. Get different spinal injections every two weeks but they have not worked that well. Live is gone in most ways
My husband has CRPS and this cream called neuropathy maximum strength help take away most of his pain. You can buy it on Amazon for $25 and it's in a purple and white jar. It's natural and it's the only thing that help him. The gabapentin did nothing for him. Hope this helps, have a blessed day ❣️.
I was diagnosed with CRPS after a surgery on my left foot for bunion that was more complex than I was told it would be. The surgery was done outpatient in 2016 and I have being having been having more pain that I have every had after any surgery that I have ever had. Now the pain is passing on to the right foot. I have had all type of pain meds that didn't work and three spinal injections. I have been depressed because with being a nurse I miss gong to work and taking care of people,now I'm in the position where sometimes I have to be taken care off. Therapy I've been to several with no real relief. I take everyday making the best off it and hope some day I will get some pain relief.
Oh Lisa ,this is terrible I also have crps for 2 years ,is the devil living in my body ,my best time is when sleeping ,I dont want to wake Up and see how miserable I am
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: drjoshua.ighalo@gmail.com or contact Dr. through his whats-app: +2349057958723 They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
At 3 months I was sent to a psychologist and psychiatrist, after 2 half years I was diagnosed with CRPS of the abdomen after having my appendix out in September 2014, the pain was from day 1 and I kept getting told "it's just surgery pain, move around more" they said and the best one was that I was just fat and depressed. Really lol my abdomen swells durning the day just and then during the night goes back to normal .. if it's fat I should be in the Guinness book of records.
I have officially hit the 2 year mark and am not happy about it. 2 years have now passed since the incident on the track. I suffer from chronic pain and for a year, I have been trying to find a treatment to control my leg. My grandfather prays each night for my leg to be cured. My leg has been jumping, numb, tingling with a severe burning pain that feels like a hot fire poker and my bones sometimes grind against each other. I also have to wear socks to bed or else my feet get so cold, I can't stand it. The pain began on April 25, 2014 before I graduated from high school a month and a half later. I was walking around the track that day during gym class when my leg began to swell as severe pain radiated down my right leg, forcing me to stop. I had to limp back to my class with someone's help as I dragged my leg behind me. That weekend my grandfather and my aunt took me to the hospital where the doctors said that I twisted my leg and wrapped it in an ace bandage. But that night, the pain grew worse. I then went to my primary doctor who told me I sprained my leg and it would feel better. It didn't. In June, I was getting ready for the day when my leg went numb from my knee down to my toes. I have not been able to feel my right lower leg since then. I have now seen 9 different specialists at different hospitals - Sinai, etc., and no one can find out what is wrong with me. I am only 23. I was planning to move to PA but my leg has held me back. My doctor sees me every four weeks for my chronic leg pain. She is worried and never saw a case of chronic pain of this multitude before. I have been on several pain meds and taken off due to them not giving me relief. I've been on a new pain med for a while now and a muscle relaxer too. I hope the Botox I'll be getting in July this year will help. I was born with Factor IV Ledien, a blood disorder, Restless Leg Syndrome, and mild Cerebral Palsy which caused my lower legs to be slighly deformed. The symptoms I had at 10 are now back to haunt me: The tingling, grinding bones, numbness, fire poker pain, and barely able to walk. In the year of 2003, I went to my mother, complaining of all the symptoms I mentioned above. She took me to a kids' hospital in DE where the doctors did all sorts of tests. They told my mom I had arthritis. I always had minor leg problems at school but never like this...until the day in April when my issues returned. Could it be arthritis, an old familiar "friend"? To cope, I swim weekly in a heated pool at the Merrit Athletic Club. The warm water minimizes the pain but once I get out, the pain comes back. Since I love to swim, I had aqautic therapy twice which failed. All other tests were negative for the following: sciatica, scoilosis, and neuropathy. I dread going to sleep at night because I never know if this 23-yr old lady is gonna sleep all night or wake up. I get these random attacks of pain down my leg at night and during the day at the best of times. I can only feel the inside of my leg. As soon as the sun sets, the pain in my leg goes from 400°-900°. Lately every time my foot tingles, it's as if I stuck it in an electric socket along with my stil grinding bones and ice cold leg. When these attacks do occur, I know nothing but pure agony until it stops. The MRI I had of my leg 3/11/16 revealed something disturbing: Mild dysplasia of my right hip and some missing cartillage of my knee. Being in constant pain for 2 years sucks big time. The reason why I haven't called back to my 10th orthopedic surgeon is due to some personal things going on right now but when the coast is clear, I'll set up an appointment to get help. I am crying watching this due to the pain.
Samantha Lynn Reading your story I was crying because it's like your writing about my life for the past three years right knee pain after a bunch of surgeries it started with super tremendous tenderness, swelling the size of a cantaloupe and also it gets super tight, and the only way to deal with it is putting ice or rubbing lidocaine 4% all over my knee and hopefully that works. And I look funny wearing shorts in the winter. LOL My knee turns beat red like it was outside for 12 hr. With no sunscreen sunburned and my foot goes cold. And I am a barefoot person I hate socks and shoes but yet I wear socks to bed and then it'll subside and I'll take it off. So thank you so much for making me feel like I'm not the only one and it's not all in my head! So now they're thinking of doing a central nerve block and will see how that goes. Good luck to you and again, thank you very much for sharing your story. 🙂
I have had RSD since 2002 they found mine out with a bone scan have you had that test done yet. I also now have a spinal cord stimulator I've had RSD in my left arm. Like I said 2002 it was a work accident.
@@madhatter2863 my CRPS is recent, it was a workplace fall due to collapsed asphalt so I fell against a granite curb and got four wrist bone fractures (distal radial and ulnar), and metal plate. I also was diagnosed from a triple phase bone scan. It showed blood flow and blood pool different from my other arm/wrist/hand. It was obvious to me that something was very wrong because my hand was swollen and discolored, the skin was shiny, and I could not/cannot fold my fingers normally. And I was still in serious pain after nine weeks.
Unfortunately if you needed an early diagnosis for CRPS in the USA during the pandemic, you'd be very wealthy or just lucky. In 2023 with a diagnosis for anything requiring many different specialists to work together....dream on. It's not likely given what's left is the business model of medicine and pressure on these professionals. Good luck finding a primary physician. Expecting a doctor that can get to know you well enough to treat anything that presents with many complications is impossible in this system. Medical practitioners leaving in drives. Patients just die more. In many cases very painfully and mis understood.
I knew something was not right when I woke up from foot surgery. I had never felt that kind of pain before. It felt as if someone poured gas on my foot and set it on fire. Had I had a meat cleaver and a block, I would of cut my foot off. The wave of burning pain was so intense, I’d go outside with my foot wrapped in a trash bag and stick it in the snow. I didn’t sleep for over 90 hours. My orthopedic doctor thought I was drug seeking. I spent countless hours searching the internet looking for answers. After finding what I thought was going on, I went and saw my family doctor. Who sent me to a pain management doctor who agreed with my self diagnose of CRPS. I’m one of the lucky ones who caught it within a week. I was put of 3,300mg of Gabapentin and after a year on that high dose, my doctor started to slowly lower it, now I’m down to 900mg daily.
CRPS is associated with the malfunction of the autonomic nervous system after trauma, injury. The autonomic nervous system controls your unconscious mind . So your brain thinks that your injury is still in pain when actually my broken wrist was healed but my brain didn’t know. I have some use of my hand at first,first year I could not touch it use it nothing. You must strengthen your central nervous system. I send Light and Love to all.✨🧚✨
I worked as a wilderness boot camp counselor and had an ax thrown at me, crushing my foot. Took over six years to get a diagnosis. I, now disabled, fight daily to combat this. My masters degree is now useless as my mobility disappears.
Maureen Simpson Ask you physician about bisphonate infusions. You can get Pamidronate infusions here in the US. My wife had CRPS. We had success with Neridronate infusions in Italy. Don’t be fooled into thinking CRPS is going to go away on its own. Chances are it will get worse. We have information on Pamidronate and we can share our Italian physicians email and other info on Neridronate. We’d be happy to help. Stay strong and God bless.
@@gregbisesi9966 Ciao!! I'm in Italy - in Rieti, near Rome. I have severe, chronic 24/7 awake/asleep c.r.p.s. - chronic for over 25 years. Was this doctor really any good? Do you still have his information? Thank you
@@TubeHDR Yes his name is Dr Andrea Giusti he is a rheumatologist in Genoa. He is a wonderful caring physician, we liked him a lot. He is based at Casa di Cura hospital. The treatment last year cost us just over $4,000 US dollars. My wife is in remission from CRPS but still has nerve damage in her foot from multiple surgeries and the severe neuropathy from two years of crps. Dr Giusti’s email is andreagiusti6613@gmail.com. He is usually pretty quick answering his emails. Good luck, I hope the Neridronate will get you into remission from this horrible crippling disease. Good luck Greg
@@gregbisesi9966 Although I am located more toward Rieti and due to the economic collapse, Genoa appears impossible for me to reach-- I really Thank you, so very very much for the Treatment Information and Cost -- any information that may help, is a step back from the balcony - You are Awesome! Grazie Mille -- Thank you! Thank you!
I Was just diagnosed with this and other then the pain is that people don't believe you when you tell them about having CRPS. They don't understand what it takes everyday just to function because you are in so much pain. I had foot surgery 1/22 and after having 4 months of PT and not progressing and still on crutches because I'm unable to walk I'm treated like its my fault. I have 2 more PT visits and that it, I can't walk the pain unbearable, I have zero range of motion in my ankle and toes. It's so frustrating and depressing!
Do any of you work? I can’t do belts or button up my own pants.. I forget that there’s a lot that my hand can’t do and every day motions get me still . No meds stim surgery soon . I’m a year in and really ready to just cut it off but was told that could spread it. I’ve lived in severe pain since the age of 12 I fell out of a tree about 80feet I have work my whole life this way n Crps takes my hand and believe it’s already spreading. Been having weird needle pains in my other hand my ears my top lip down n one foot ! This disease has done one thing positive for me!! I 💯 percent accurate about the weather n usually can tell a day or 2 before it rains or snows !! My pain is at its worst on those days I am in Indiana so it’s a constant hot flashes sweating super pain and fight off vomiting . Confusion, sleep deprived the night to day hours are horrible. This has truly put me on my knees changing my life I’m dependent on others now wich has destroyed me. Hopefully stimulator will be my life saver
I have CRPS from a brain injury sustained in a car accident. The unfortunate thing is that I have gotten the "Super-Whammy" of accompanying disorders. Due to my brain not processing pain signals correctly anymore the pain I experience is whole body (widespread and ferocious!) On too of that I also have narcolepsy, PTSD, and a myriad of depression and anxiety issues. My only salvation, after seeing a procedure happy Dr who did nothing more than exacerbate the pain, was finding a true, caring neurologist who gave me a correct diagnosis. After years on opioids, I felt my life was as being governed by them. Finally had a Medtronic implanted medication infusion pump done and the pain control takes care of itself. I have muscle relaxants and pain medicine in my pump. It has to be filled once a month by Dr and I also have medicine for break through pain. My life is probably as normal as it will get- but it's so tremendously better than it was!!
2004 I had an accident and now it's halftime in a wheelchair. I was an instructor for skiing for disabled kids last time I try to do the I did but I came home I could walk it was so hurting kind of my dream I need to do more. give me tips when you know what to do I'll try pills everything I can get.
Thinking of you all! So what is early treatment? I’m going on about a year now… started with left calf pain - turned out it was Achilles tendonitis and plantar fasciitis so doc put me in boot then cast totaling 10 weeks. Came out of it and it all began.. around last June. What is early treatment protocol? I live in NJ/PA. Also, I feel like the doc who put me in the cast is responsible bc that was his first line of treatment when my neuromuscular doc said I should have never been out in a boot or cast… this has been the worst year of my life in many ways… would love thoughts!
A physician would be able to determine which treatment works best for you. If you are on Facebook, please send us a message via our Page (facebook.com/rsdsa) so we can send you a list of our recommended physicians in NJ and PA. If you are not on Facebook, email us at info[at]rsds.org.
I got hurt at work on my left arm, shoulder, hip , elbow, hand. Since the insurance has been lagging for almost 2 years. I requested to see a QME doctor. He said I have C. R. P. S. This thing is not good. But the difference is that I can't feel my left arm from my elbow to my hand at all. It gets severely stuck when I put my hand into fist 👊. It takes over 20 minutes to get back to normal. What can I do? For help
Hello everyone.please tell the experience if somebody visited Speroclinic Dr katinka fayettevilli Arkansas USA. I saw her vedios on you tub ,she is doing good job.please share if somebody heard or visited there. Actualy my daughter is suffering from CRPS of left foot after getting ankle sprain.Now i do not know what to do and where to go to get treatment.thank you.please reply.
Mines in my hip. I cant lift it up and it affects my balance. I've lost muscle function in my butt and I compensate with my left leg and that side hurts all the time. No one gets it. It's a very lonely condition. I'm tired all the time. Sometime I just wanna chop the damn thing off. It's also in my hand this time so I've lost my grip.
We're so sorry to hear this, Sally. Are you in need of a new physician who can give you relief? Email us at info@rsds.org so we can send you a physicians list for your state.
Hi I am so sorry for your pain I totally understand the burning and being cold to the bone, I get the creepy Crawley up my arm not to mention sweating on one side of your body all the same time and being cold at the same time it's an awful way to feel :( Do you get like that too? I got this terribly disease a week after I got married in 2002 can't even we're my wedding rings on the hand it suppose to be on :( I wish you the best if you need to talk I will listen .
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I got it 1 & 1/2 weeks after a dental implant in lower right jaw. R wrist and hand swelled, turned bright red & was contracted. Couldn’t open my hand. The pain was unbelievable. If I moved wrong I screamed. Otherwise it just throbbed like I’ve never felt before. It went down in about 2 weeks completely. I had Lyme Disease for years and was better until I had a spider bite last summer. I started getting sicker and in pain all over. I think I’ve had it simmering for a while. I researched and found a clinic that has helped people to be free of pain, to walk again and get their lives back. I’m going next month. Thank you to all the doctors who care about people with this disease. We will overcome by God’s grace and mercy! God bless you to every patient in Jesus’ name🙏🏼❤️🩹
This Syndrom is 😬. I'm from Germany and we've got no Organisation who can give People like us some advice. Is there any one who got some Informations? What brings the Pain Level down?
Hello. Can someone give little more explanation regarding prognosis and chances of not developing full fledged disease? About 5.5 months ago I got injured with glass in top of my wrist. Had tendon repair and sensory nerve repair surgery.Was in splint for 5 months, after taking the splint off doctor sent me home said do home exercises in water. After 2 week still could not move my hand and was swelling there. I was put on physiotherapy and my condition improved but still I m in pain at places in my arm other than injury sometimes, unable to make fist and pinkish to purple coloration occurs whenever I’m out my hand down . I just wonder i revered some of the symptoms ? But it’s really slow and physiotherapy is really painful. Could someone elaborate it more and what are the chances to cure this if I can ?
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: drjoshua.ighalo@gmail.com or contact Dr. through his whats-app: +2349057958723 They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
they say there is no real cure for this! but I have been in contact with this clinic in Italy, they say they have been treating patients for many years now with great results, they have a specific treatment for it. I'm currently in the process of applying as a patient...fingers crossed...
Just diagnosed after I broke my leg & shattered my ankle 4 months ago. It’s in the heel of my foot, it hurts to walk & it throbs if I take a deep breath
Lmao I do. I’ve had it for 4+ years but since I never had any trauma, doctors couldn’t figure it out and they kept dismissing me and whatnot. I have CRPS in my legs and feet, and it has now spread to my stomach, my mom wouldn’t believe me so I was suffering for a really long time. Being an actor/ singer this was a huge impact on my life cause it stopped me from doing everything I loved and it keeps me in bed 24/7
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I want you to know that I have a niece who suffers from RSD/CRPS. She has had excellent success with a therapy called Calmare or Scrambler therapy. She went from nonfunctioning to near normal. She went to Dr. Meyers in Long Beach, CA. www.meyersmedical.com/ Hope this helps.
@@madhatter2863 I have it full body and the sad thing about this I haven't gotten the proper care since I had this curse 6 years . My prays go out to you & everyone else with this syndrome
My CRPS has actually improved. Have you tried diet change, small weight loss, antiinflammatory diet, Vitamin C, probiotics, Alphalyproic acid, TENS, warm water therapy (pool), stress reduction, and of course, prayer? Please feel free to reach out to me. I start Ketamine infusions soon. I've heard it radically improves one's life. I'm praying for you Lynn. Lexi
@@lynnbain3543 That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
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Literally sobbing whilst watching this, this disease is cruel, it's taken so much from me and my family. But I wont let it take my whole life. My message to other sufferers is that you aren't alone. Don't suffer in silence, there is support our there, finding a fellow CRPS warrior can help, talking to someone who truely gets it, is life changing 🧡
Me too
I've been a warrior for myself during years of this painful and misunderstood disorder and have found no support groups. Through the pandemic look at what's left of our health care. The whole system is so degraded under impossible pressure and greedy corporate thinking. That's what gets hammered into me every time I seek the real care I need. It's tough luck. Things have changed. Maybe if I were wealthy. I'm not. I am receiving the message that I'm expendable loud and clear. Medical professionals aren't too happy either. Most really want to help people. It's not set up that way anymore. Heck. Medicare doesn't even cover some of the prescription treatments that help. The stress of this broken system adds to the pain.
Yes, from all of us who have it. It is cruel
🙏🙏🙏
Man it's literally like living in hell, the pain never goes away
May Allah give relief to all my fellow human beings suffering from this painful disease! AAmeen!
Thanks for the love and wishes, Abdul!
Thank you amen
Thank you!
Thankyou.. after 8 months the pain wore me down to the point, I gave up.... I started planning how to end my life. It didn't matter what opoid or drug they gave me,,, nothing stopped the extreme mid-back stabbing pain .... I couldn't stand or sit for 5 minutes. Because it was a workplace injury "Saskatchewan WCB" did everything possible to minimize the injuries I suffered at work ... Doctor #4..... 1 week after workplace injury finally ordered a x-ray.. The radiologist opinioned.. "It is possible the sacrum and coccyx are fractured however this is "Debatable" and further radiolographic followup will not be necessary. - My physicians repeated requests for expedited specialist appointment to WCB was repeatedly denied. Almost 2 yrs. after workplace injury my broken back was finally diagnosed, this was followed by a Retired Neurosurgeon under contract to WCB. "Multiple recommendations he opinioned were denied after WCB wrote to the doctor with "Falsified Medical Information" which saw the Neurosurgeon rewrite his 4 page report to a 1 page report. "Then WCB "Terminated" the claim, said I didn't have a job to go back to and issued 4 weeks job search benefits. This was deliberately done, so there wouldn't be a graduated return to work, and when problems were encountered, WCB wouldn't have to investigate. I returned to my employer and when problems started WCB "Blatantly Refused request for expedited Specialist Appointment + MRI...
Thanks Abdul. It's nice to hear something empathetic from a Muslim. God bless you.
I am so glad I watched this video it has given me relief I am not crazy 😏😓😞 the pain is unreal at times I have been dealing with this by myself for 3yrs. It's a very lonely disease because no one believe you
Im with you on this Journey. I have it too: right ankle.
I am sorry:(, no you are Not crazy and Yes your experience of pain matters and you deserve proper treatment with pain controlled! It's hard to find Dr.s that listen, I went through years of not being believed when they could not find cause through standard blood test and xrays, but it was 2 rare genetic disorder all along! Keep fighting and know you don't have to fight alone, their are many groups, advocates and other patients that really care what happens to one of our own especially in these times where so many are not getting the Medical attention they need we have to stick up for eachother:) I am at The Insufferable Movement on Facebook if I can be any support:) Lindsay
Imperfection Perfected1980 I wish neither of us had to live that
I have it in my right ankle. I believe you ! It's a lonely disease, true , but we are all in this together. It's one day at a time.
@@Scatpatoulouful Same here, Mathieu. Same side ankle is what sparked in for me from an injury years ago. Now, it's traveled into other areas of my body and caused even greater issues. I send all of you Healing Blessings as we look to find a cure.
One of the painful things of RSD if it is very bad (I have it from head to toe and have been sick for 17 yrs) is not being able to work. I worked till the pain no longer allowed me to work. A working day would keep me in bed for 4'or 5'days. It got worst. It is at a point that the pain hasn't allowed me to move from my house. I have only been able to leave my house about 5 times in 4 years. Most friends get annoyed or don't have the patience to stick around someone which is sick and can't go out or will cancel visits because of the pain. I have also lost family which think I am not kind when I can't see them. I am so tired, I am exhausted of fighting a fight which I see as hopeless. I am praying for a medical breakthrough. I thank my mother, wife, aunt and my kind father which dedicated his whole life to fighting for me.
Omg your so brave😭
@@utopiaria1514 I just saw your message, thank you for writing. My Rsd / Crps has covered practica.ly all of my body from my eyes to my toes. The good news is I am a little better. After 10 yrs I was able to spend Christmas with my family. I was also able to travel and get a physical. Getting to the airport was impossible and exhausting.
What have I done? Exercise! Firsti srtarted to stretch fi gers and toes so I would recover flexibility and then strength. The whole point is that exercise should be done till a point that it makes you tired but not to the point it takes you out of action for weeks. So you have to listen to your body. Some days you can do more some days less, some days you have a crisis and all your progress goes down in flames and you start virtually from 0. The good thing is that every time you will recuperate faster especially as you develop muscle. It is not that the red goes away but you have a stronger body and mind to cope with pain, so it becomes more managable.
After that I started trying to stand on my toes holding a chair. Three second reps 2 0r 3 reps. After a while I had calf muscles. I started walking 2 minutes per day. That would put me to sleep an hour or two. After some time I was doing 15 mins. Today I walk 3 hrs per day.
Physical resistance and muscle development will help you a lot and will help you endure pain enter. After more than 30 drs and expensive treatments this is what has worked best. Besides one girl I met in Tampa no person I have ever met has had a worse red than me. I seriously thought about ending things many times. It was so painful. Mygoal is goingback to work nextyear.
@Mikayla westwood sounds fake I see this being spammed everywhere has to be a scam
I was diagnosed with crps at 8 years old I’m now 14 and I just I have no more words
More of us need to get this out and the government must help us. Too many years without help that I went thru going from one doc to the other. I knew I was not crazy or that it was just in my head. I had it over 20 years before I got to the right doctor. I was the one who thought I had RSD and I did.
Thank you for this video. My crps diagnosis came quickly, however, I haven't had access to real treatment for it. I struggle everyday with high pain, depression and more... I've lost my career, home, and independence this last 2 years since mine developed. It's nice to find videos like this, with simple language, to be able to share with others in hopes of bringing awareness. I hope and pray that a cure is found one day..
I hope you are doing ok now. Have you managed to find things to drive you forward?
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I hope you're doing better these two years later.
I’ve had RSD for over 20 years it was in remission for the last 10 years but just started up again. I wasn’t sure what took it out of remission but my heart doctor asked me if I had hurt my back recently and that’s what started it again I had pulled my back out 2 weeks before the pain started again. So glad that this is on ytube now. Thank you for sharing 😢
It's crazy, I'm 77 years old and have had crps in both feet and lower legs for 3 years now, just horrible. It started within 24 hours after receiving novicane shots to both knees. My toes started turning bright pink and burning. Today I can hardly manage to walk and I'm in misery every waking moment. My heart and my prayers are for all of us with crps-rsd
Thinking of you, Thomas. Let us know how we can help.
I have CRPS in my right side down into my foot into my toes, it can be very painful for walking, just getting around, I live each day one day at a time.
I care about your suffering but I can't help. I'm sorry life has done this to you.
I have had CRPS for fifteen years, it started with a fracture in my right foot. Now I have in both feet, and legs 24 / 7 which makes walking not only extremely painful but difficult.
Four years I’ve had CRPs. It started in my right foot then went into my ankle. Now it’s in both feet and ankles and going up my leg. I recently developed drop foot. There wasn’t any trauma that caused it. My dr and PT both believe CRPs is the cause as my right foot has been turning in for the past two years. I now wear a special made brace to keep my foot up. Bc without it the toe of my shoe drags and trips me, makes me fall. No one with CRPs needs to be falling.
So, if you are having trouble with your CRPs foot/feet being pulled out or in. Please get into you Dr.
Physical therapy can help. I now do pt everyday and I’ll for the rest of my life….. but oh the next day the pain is, well you know, awful X100.
I hope and pray all of you out there will heed the direction of your dr. Be proactive, and do not just sit around. That’s detrimental.
Hi my name is Susan and I have CRPS, I have had it for 17 years, Pain is so bad I can not even say how bad it is because it is off the charts, the swelling is so bad, in my right foot including my toes, its just miserable, actually it is beyond miserable way beyond that. Past 17 years have been totally a nightmare for me, I lost my husband and I have CRPS it is a rough ride but I live everyday best I can and I try hard to take care of my self and try not to complain but it is hard not too when ur in a lot of pain and the swelling is so bad. I have a Pain Specialist I do see he says that he would trade places with me, I ask him one day so why don't you?? he of course laughed and got and walked out of the exam room. I just do what I need to do to live with this each and everyday.
Same here, sweetheart 🌿🌿🌿❤🙏🏼
Love this, it explains in simple language what we live with on a daily basis. Thank you for making this video!!
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Thank you for this video. If only one more person is educated to either understand what they do have or helps one loved one to understand just a little bit more how hard a person with CRPS is trying not to make your life different just because theirs is now different forever. If people can understand, IF DOCTORS will understand that those of us who are suffering with CRPS would do anything and I mean anything to go back to the day before we knew we had CRPS and live that day over again we'd pay anything! Please family and friends of those with CRPS, please try and understand that we don't want to be sick, we are and almost as bad as the pain we feel is the pain we know we are inflicting on others. Please be patient and please know that we understand that you really can't totally understand...that's OK if we both try things will workout!
I thought I was the only person with this disorder because my docters were so puzzled as to what was wrong with me, I no longer feel alone in this journey
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I've been dealing with this for four years, been to many Drs, 99% of them made me feel like I was crazy or "it's all in your head". I've had a severe burn and that's what it feels like. Like my foot/leg is in a fire. I finally have a great Dr who actually cares. I don't feel alone anymore.
it is helpful to have videos like this to inform and help those of us suffering this hellish condition, to not feel so alone.
I've had this for several years. B4 my injury i could do the splits n crazy martialarts. This has taken my, near action figure body. And so much more. When the berametric pressure fluctuates, I'm bedridden. Best wishes to all who suffer from crps n props to the ppl reading n watching this content who are trying to understand what a loved 1 is going thru.
"It's just the little things"...
I truly THANK YOU for this video for 2 reasons...#1 to remind us who deal with this disease that we are not ALONE!!
#2
The more the general public can become aware & understand how this disease truly effects all aspects of life (my kids were 5 & 2 yrs old when my whole life changed)and it is devastating not being able to be the Mom I wanted to be & thought I could have been (as well as the wife I once was) I think it will make just one "little thing" fe a little bit better for those of us who suffer (you do have to be grateful for any & all the little things)
For me it's not about wanting/needing their sympathy but just some patience and understanding can go a long way.
Keep your heads up and be proud of who you are and any "little things" you have and create.
thankyou for this video I suffer with fullbody rsd/crps for 13 long long time I was told 10 years later I had fullbody rsd I know how you all suffer and iv cryed with you and yes its a huge shift for your life and your familys as well .its very painfull and I hope we have a cure soon.all drs should be aware of this now and send you to someone who can help and not assume its in our heads and for some of us it really is severe burning pain .keep going till you find the right dr who will help you.I think about all of you so please fight and fight hard for your rights and your rsd.
Hang in there my fellow pain sufferers! You are loved and cherished! Jesus loves you! He saved me from suicide from this disease years ago, gave me hope and strength
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
My husband has CRPS and this cream called neuropathy maximum strength help take away most of his pain. You can buy it on Amazon for $25 and it's in a purple and white jar. It's natural and it's the only thing that help him. The gabapentin did nothing for him. Hope this helps, have a blessed day ❣️.
@@florencedonald6419 how do you fix it
@@westsidekasper4860 she is a scam artist. There is no cure, only varying degrees of remission.
@@florencedonald6419 You need to be taken out. I'm going to make it my business to do that. If I ever see you again on TH-cam I'll find you and deal with y. I have the resources.
I just got diagnosed with crps and this helped me feel like I’m not the only one that feels like this that someone else out there undertanads
You are not the only one! If you need to find a support group visit rsds.org/find-a-support-group-near-you.
if you email me at info@rsds.org, we'll send you many good resources
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
Thank you Kaitlyn I have had RSD/CRPS since 1/2003 I have it on all 4 quadrants and the back of my neck. Very hypersensitive. Burning off the charts to this day. My two kids were young too. And Your story reminded me of me and how I felt exactly. I was in my early 30s and everything I was doing, or going to do. No more 😢. What kept me going through those ups and downs was my faith, my family.
I deal with this in so many ways that I have to use a walker every place I go it is hard but keeping myself going through God's help. My prayers are with you all one day you will be healed keep the faith you will be healed through the Lord..
me too, Old Timer. 30 years now! Prayer and my faith in our Faithful LORD and His Truth and tender Mercies
My grown Son is going through this too! He is so courageous! He and his wife have 3 children and he does his utmost to raise his children with a very supportive wife in the understanding that pain will not stop him from living!
This is a short video, but it explains what I have and will be going through most likely for the rest of my life. This is an amazing video to share with everyone who is a part of your life.
I understand so well the feeling of young children and taking care of them. After over 45 years of this, I am still going
Thank you for the video. It is good for me to hear these stories. At night when my pain is at the worst it’s easy to feel alone
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
No it is not true. do not lie.do not misguide people.
Use running hot water and liquid soap. Heat the area well with the water and massage gently manually. Dry off the area halfway and do a second massage with a good cream or lotion. I do this before I go to bed and it dials down the pain so I can get to sleep.
I have been with RSD CRPS OVER 20years find a Doctor that knows RSD CRPS. Group therapy will HELP very much. we all have a different HURT and PAIN LEVEL. Please live does go on👌😳😍
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
Took me 18 years to be diagnosed and of course there were tears but it was tears of relief that I finally knew what was happening and that maybe I could find help. Now it's a struggle to find a doctor willing to treat me.
Shari, please email us at info@rsds.org and we'll send information and a treatment referral list for your state
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I was diagnosed in 1999 and was so fortunate that my doctor had just read about this new disorder, RSD, and I was diagnosed in only about 6 weeks. My original injury was a dog bite where my median and ulna nerves were crushed and severed, they ripped one muscle in half. My symptoms occurred shortly after my surgery to repair my arm. I understand I was so fortunate. I have a pain pump, and still take oral pain medication, my day to day life stopped. I had to reinvent myself. It has interfered with my relationship with my daughters, and other family members, I stopped dating, I lost most of my friends. But thanks to my BFF, she has stood beside me and never wavered in our friendship. Now, 21years after it started in my left arm, I am now having issues in my right lower leg and foot. We are watching it carefully to see what develops,
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I found this video trying to find advice on how to deal with my own CRPS. I’m sorry you’re all going through this, but glad to know I’m not alone!
You are far from alone. Send us an email if you need anything!
My daughter had CRPS for 7 months before we found something that worked I found a dr in Dallas that used scrambler therapy and now we have one in Shreveport La. She has her life back and able to go back to school as a jr in college. Unfortunately it is not covered by insurance but it was worth every penny we spent to get her back walking again
God bless her. She is a real trooper!
@@florencedonald6419 do not misguide people please.
Praise Logic that I got the reference before mine got too bad. After a podiatrist appointment following a car accident, he referred me immediately for CRPS treatment. I had the stabbing pains and all the other issues, but he was adamant in getting me the proper treatment. I've been in remission for 3 years. I do have chronic, non CRPS pain from the other injuries, but no signs of it coming back so far. Access to proper treatment, which is actually very cheap to do when you catch it early, is the key. I was supremely lucky that mine was pegged at 2 weeks after the injury due to my flushing reactions.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I was hit by a car walking and got a ankle fracture and for years nobody could tell me for years why it’s very depressing finally my neurologist finally diagnosed me with CPRS. I was down when he said there’s no surgery to fix it. He has me on lyrica and gapapentin
Mine was initially diagnosed as degenerative arthritis but it took my foot dr sending me to an orthopedic surgeon in Grand Rapids it took him one year after I first saw him to diagnose it. The color changed in my feet and ankles that and the constant pain got him to realize that's what it was. The fight at age 24 is becoming more difficult. As the winter approaches I feel worse.
mine was here in kalamazoo
Temperature is a huge trigger for me - hot is bad, but cold is worse!
4 1/2 years struggling with this horrific disease, started in right foot in response to a torn knee meniscus...it slowly and painfully overtook my foot, moved up my leg into my damaged knee, infected knee bones,( one Dr. pointed out on x-rays), and no one would do the knee replacement needed. Following another shoulder injury,(glenoid labrum started tearing out, again no Dr. would bother with it...it finally tore out from the 12 oclock to 8 oclock span..a real mess....AND it gave this RSD a chance to migrate through my body, as if it was "hunting" places to spread to...and it did..I cannot describe this burning, like hot knives stuck in the base of my neck...down the injured arm into left hand...it's overwhelming, and when mixed with other injuries, it becomes catastrophic in nature...a monster of torture. If you don't have some kind of faith in God, (btw, don't blame God.) cry out, learn to pray. You don't have to become a religous person, nor will you not have the tendency to let some cuss words fly out. Thanks to all of you who post here. You are in my prayers.Please keep going, don't give up, don't end your life, you have great value, no matter what your mind thinks from time to time..there is a saviour named Jesus who loves you....just believe, talk to Him..the rest will work out.
CRPS is the worst thing ever, and then you have to deal with people saying your faking it, makes it even worse. Just imagine going to sleep with the worst pain you've ever felt, and waking up and it still there day after day
I personally feel like saying crps is "chronic pain" puts it in the wrong category. It's a dysregulation of the nervous system which produces chronic pain but so many other co conditions that it is so much more than "pain". Honestly....it needs to be reclassified. We warriors deserve people to understand the truth of what we go through on a daily basis!!
I'm a former nursing manager, diagnosed with CRPS in 1999 following a sleigh riding accident where my thumb was torn. The hand surgeon waited for 4 days before doing the necessary repair. Meanwhile excruciating, burning pain became unbearable. Six weeks into PT the therapist mentioned she believed I had CRPS. As a nurse, I hadn't heard of this. My orthopedic hand surgeon was seemingly clueless. My PCP took one look at my thumb/hand & was horrified - he knew immediately it was CRPS (called RSD then.) Confirmed by neurologist. It's been a long arduous journey complicated by pain management who played guinea pig with my care. Previously healthy, he had me taking 24 different medications before I finally put a stop to the insanity. I had more nerve blocks than could count. Had SCS implanted followed by serious spinal fluid leak. With the help of my PCP, I weaned myself off all but 5 needed for my now diagnosed hypertension, pre-diabetes, narcolepsy & one (maintainence) pain med. Aqua therapy enabled me to handle the weaning off process.
I use relaxation music & occasional edibles to sleep.
My biggest concern - the medical community is still overwhelmingly unaware of CRPS. Many specialist physicians in the metropolitan area are uninformed & have never dealt with CRPS. This unintentional ignorance must change. My daughter is a PGY2 ENT Head-Neck Surgery Resident & grew up dealing with my condition so she's been well informed. Her husband, a PGY2 Family Medicine resident physician was not formally educated about CRPS but is aware from his 10 year relationship with my daughter.
I have printed out information sheets & give them to any physicians I see. Medical schools & nursing schools must include this in their curriculum. The incidence of CRPS has grown- it's been found to affect many of our veterans who have been in combat. My military officer son- a Black Hawk pilot instructor & ALS Paramedic was able to help diagnose several cases during deployment in Afghanistan.
Education is critical for all medical professionals-for early diagnosis & treatment.
This is sad just imagine how quick pain goes away but while you feel it an instant can feel like forever this would be horrible to live with I hope they create a cure
I really liked this, but when rewatching to decide if it plead one to even think about sharing with my family, my friends, it greatly minimizes the disease and the reaction and full impact on my life that would give them any reason to take me setiously finally. would like this more of share it if it wasn’t another thing that would leave everyone on such a positive note on oh, see you are just in some pain, see they said have one cry… go on, change you life a little. It touched me so much at first, but doesn’t even highlight the true reality of my life. I’m in a wheelchair, losing the blood flood, as it spreads to my body. I am going on, but this will let people cobra us to say, get well soon. You are strong. You are resilient. It’s okay- pat pat. They will watch and feel there is no validity for me to file for SSDI, cry more than once, or continue down this very serious snd horrific disease. For right now, if I had that much pain, it could only be understood if I was curled up in a ball screaming constantly, so there is the prof they need that it’s not worse than childbirth, because you see the screaming, cussing in movies and tv and then life is born. You have sympathy for amputees and especially the veterans. But you see me in my wheelchair, looking normal, yet no emotion, tired, if I smile -watch out- I’m perfectly happy and the RSD is gone. If I use my rollator, I’m healed. Early diagnosis- what a joke. I had that from top doctors, not enough, let’s add 5 more and a neurosurgeon, but is that enough, jury is still out and my PT keeps being denied. Ha. One office visit. No pain management doctor would ever take that seriously. It’s too rare. Not enough times to have everyone there could be rule out every thing else. Any other reason for the edema, decided that your issues shouldn’t be surgically corrected. They are minor. I’ve had about 20 MRIs and at least 10 other types of testing. Only had OT right now.
Do another one giving the public the signs and symptoms so that a diagnosis can be reached sooner
😢😢😢😢😢i cried threw this hole video knowing now there are people put there that have what i have and all these years i just kept hoping and praying 😢the
I’m only 13 and developed full body crps and many other chronic illnesses from a tumor on my spine formed from a gymnastics accident. The an excruciating amount of pain every second is debilitating. It’s unlike every other pain I faced from surgeries and broken bones and spinal procedures and cyst like tumor growing in my spinal cord. It’s draining and it is taking a toll on the amount of time I have to live my childhood like a normal kid.
Check out this organization, rsds.org/crps-pediatric-family-journey/
My Husband was diagnosed in 2015 with CRPS after a knee replacement that went terribly wrong! The last few years since we researched everything. Ended up seeing a Dr at Kaiser Permanente Hospital in Redwood City California. He under went a procedure to have a spinal cord stimulator implanted in his spine. He has to charge like a phone , but it does help! He also goes in for Ketamine infusions 3 times a year at that same hospital . It helps .. such a horrible condition , it has changed both our lives!!
I was diagnosed with CRPS yesterday it only took 2 moths but that is because I pushed for an early appointments with each doctor as felt like I was being ignored by them ( each appointment was 2 months away) I ended up in A&E 3 times and every time I felt that I was making it all up even though you could see the swelling, the change in colour ( red ) or that I couldn’t move my foot. I was put on pregabalin yesterday and for the first time in 2 months I was able to sleep. My Journey has only just start but I now knew what I have. Thank you for putting this video up.
We're here for you Tammy. Let us know if you need anything else from us. Feel free to follow us on our other social channels to meet the rest of the community and send us a email at info@rsds.org with any questions.
@@RSDSA thank you for your response yesterday and last night have been really bad that I have had no sleep and been crying most of the night. I've now got pain in my right leg which is making it hard to stand on. I'm on couches and cannot put any weight on my left foot. I've also been made homeless as cannon work and now wanting on the council to see if CRPS I a condition that requires me for 're housing so now the stress is even more. The interview could see how much pain I was in but because CRPS is so unheard of no one knows how to deal with someone who has it. I'm hoping my doctors can help as do need help with everyday living as I'm only in the early stages of treatment.
Once again thank you for your response.
Kind regards Tammy x
Tammy, are you aware of our patient assistance fund; rsds.org/jenkins-patient-assistance-fund/ ?
Tammy O'Brien dear Tammy how are u feeling now? They’ve put me with same medication from today
I’m 13 and I have crps in my right leg left knee and left wrist, I’ve had so many doctors tell me it’s all in my head untill I went to royal Manchester children’s hospital they support me and help me get through it and hopefully get better
You are so young. Sorry you have to go through this. Best wishes 💕💕💕
The orthopedic surgeon who operated on my wrist: "You have to see a pain management doc" The neurologist who was treating my through-the-roof-migraines as a result of my CRPS: "No, you have to see a physiatrist". My PT: "No, see a pain management doc" (was she afraid the physiatrist would take me away as a client?) PS- And no, I didn't "cry" when I got the diagnosis; I thought, man, this whole "syndrome" thing sounds way too fishy for words, frankly: it's this, it's that, it's everything; there's no parameters. It's like some vintage documentary: CRPS: THE EARLY DAYS
My story is similar to the lady in green! I wish I had been able to have her attitude when I was finally diagnosed with it!! I have spent the last 5 years not knowing from day to day how I’m going to feel when I wake up!! I did isolate myself from the outside world because everyone kept telling me that I just needed to get back to work and quit using it as an excuse!! I’ve been seeing a counselor for over a year now and I still have really bad days!! My accident happened because of a dog and I have PTSD so bad that I can’t be around dogs even if I know them!!
Thank you for this video ! I have it in my right foot and the pain is so intense, I get thoughts of just cutting my foot off because the pain is so bad. 😔😔😔...
@happy days, my wife too has CRPS in her right foot. She had to have her pinky toe amputated due to deformity from the severe neuropathy and you know what....it just moves to someplace else or further up the extremity. We did not have the amputation to get rid of the affected part. She was unable to wear a shoe due to the severe contracture upward, pain and inability to walk properly.
We are in Italy for our 2nd round of Neridronate infusions. The first round a year ago worked well but the subsequent surgery brought back some of the symptoms.
In consultation with our Italian doctor, he felt one more dose would put her back into remission. We also do nutritional supplements. Please try Normast. It can be ordered online and has really helped with pain and burning.
We also do cognitive and brain exercise and balance skills. Happy days, you need to be your best healthcare advocate and research and talk with others and find the treatment that works for you.
So cutting off limbs is not so much a good treatment 🙁
Watch BEATING CRPS in you tube ,maybe you can try and let me know please how was your journey
I hope you have some relief now and no longer have those thoughts.
Oh my god.. I'd have ended my life.. I don't know how others can stand it. They're so strong
Yes, it's invisible in most ways. But you just have to know it yourself. Find caring practitioners and someone who deals with targeting the autonomic nervous system. Notice what makes it feel better or feel some relief. All the best to you!
Anyone with CRPS look up Dr. Tim Tollestrup CRPS video. You may not need to suffer.
I had a considerable short diagnosis time 2 1/2 years from injury that caused the CRPS. But it was that time that Drs broke my spirit. They said that the pain was all in my head and that I was just acting in the way I was due to pain because I "wanted attention".
I tried to kill myself twice during that time and I was in quite a dark place that no one should go through. There is a reason why CRPS has a nickname of the suicide disease. It's because when a person goes for a long enough time of unrelenting pain they are done with the pain, done with people assuming that they are crazy and just done with life.
I am grateful that I've found a Dr that has agreed to place me on methadone as it seems to work the best out of everything I've tried without impacting my thinking too much.
Leslie, wishing you Godspeed. I'm glad that you're doing better!
Amen for not killing yourself.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I must have gotten unbelievably lucky with the first doctor I went to see. My leg is the center of my pain. Goes from ice cold to hotter than the fires of hell. I thought at first I had a DVT. An emergency to be sure. So, I went to the hospital. Had an ultrasound done and no clot. A neurologist came to see me and did a quick nerve conductivity test and my sympathetic nervous system failed miserably. He then told me he's only had 1 other patient that ever had such poor results from that test and they had CRPS. I've suffering through the pain for 12 years. I so far have refused to take opioids. I don't think that's going to be an option for much longer though. The pain is spreading into my spine and further down my leg and now into my other leg. Honestly, I've considered taking the easy way out.
I would like for every CONGRESSMAN to have this pain !!!
I don’t know if it would help others but I have had some success with using magnesium oil (magnesium chloride) topically and magnesium tablets internally. I fell down stairs 1 year ago and have been diagnosed with CRPS. My pain is from knees to toes. This has dampened the pain for me. I have also added more vit B complex and breathing exercises.
I was diagnosed 7 years ago. Every day is a battle. We got this, one second of 1 minute at a time! #FlamingAngelsRock
I was diagnosed in 2011. Due to nerve damage when I had back surgery.
It's not fun. I hated myself, it had altered my life w my husband and grandkids.
For the most part, pain is under control not gone. Numb along the track of my S1 nerve. I now hurts to use the bathroom. Sends pain down my leg.
I now has a lot of leg cramps, and stabbing pain in my Achilles.
I had been on lyrica (hated it) it alter me from who I was. I hated everyone and the world I was in. I have been on cymbalta and gabapentin since 2012 max dose in 2014.
It took me years for me to be able to touch my own foot. I hated the pain. I rub it daily so my brain would understand it's ok.
My Dr. Now wants to do a spinal cord stimulator. Not sure I want to do another surgery. He understands that.
Debbie, have you investigated low-dose naltrexone? It is a compounded medicine which reduces the microglia activation in CRPS. If you email me at info@rsds.org, I can send you information
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I have not been diagnosed but have had this pain for 2 years since the first surgery on my left ankle. I can't take it anymore. There is no relief and I can not get away from it. I don't know what to do.
Go to the University of South Carolina...you WILL get a diagnosis there. And the sooner you get the diagnosis, you can file for total Disability
Don't wait until it is too late. My daughter has CRPS, no diagnosis for 7 years; therefore, it was too late for her to get on disability. Don't settle for anything but a true diagnosis..Google to find doctors who treat this disease..
God bless all of you who suffer with this disease. CRPS pain level is up to 40 on the pain scale..
….i was told in Triage that I’d had this pain for so long, I should be used to it by now!
6 years Started from left arm having all flesh ans muscles torn off. Has moved to both feet and legs. Left is so bad that skin splits and oozes fluid. Get different spinal injections every two weeks but they have not worked that well. Live is gone in most ways
My husband has CRPS and this cream called neuropathy maximum strength help take away most of his pain. You can buy it on Amazon for $25 and it's in a purple and white jar. It's natural and it's the only thing that help him. The gabapentin did nothing for him. Hope this helps, have a blessed day ❣️.
I was diagnosed with CRPS after a surgery on my left foot for bunion that was more complex than I was told it would be. The surgery was done outpatient in 2016 and I have being having been having more pain that I have every had after any surgery that I have ever had. Now the pain is passing on to the right foot. I have had all type of pain meds that didn't work and three spinal injections. I have been depressed because with being a nurse I miss gong to work and taking care of people,now I'm in the position where sometimes I have to be taken care off. Therapy I've been to several with no real relief. I take everyday making the best off it and hope some day I will get some pain relief.
Oh Lisa ,this is terrible I also have crps for 2 years ,is the devil living in my body ,my best time is when sleeping ,I dont want to wake Up and see how miserable I am
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: drjoshua.ighalo@gmail.com or contact Dr. through his whats-app: +2349057958723 They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
Finally I got diagnosed after battling workers comp. Now the battle begins….
At 3 months I was sent to a psychologist and psychiatrist, after 2 half years I was diagnosed with CRPS of the abdomen after having my appendix out in September 2014, the pain was from day 1 and I kept getting told "it's just surgery pain, move around more" they said and the best one was that I was just fat and depressed.
Really lol my abdomen swells durning the day just and then during the night goes back to normal .. if it's fat I should be in the Guinness book of records.
Sad to hear professionals treat patients this way.
An amazing video
I have officially hit the 2 year mark and am not happy about it. 2 years have now passed since the incident on the track. I suffer from chronic pain and for a year, I have been trying to find a treatment to control my leg. My grandfather prays each night for my leg to be cured. My leg has been jumping, numb, tingling with a severe burning pain that feels like a hot fire poker and my bones sometimes grind against each other. I also have to wear socks to bed or else my feet get so cold, I can't stand it.
The pain began on April 25, 2014 before I graduated from high school a month and a half later. I was walking around the track that day during gym class when my leg began to swell as severe pain radiated down my right leg, forcing me to stop. I had to limp back to my class with someone's help as I dragged my leg behind me.
That weekend my grandfather and my aunt took me to the hospital where the doctors said that I twisted my leg and wrapped it in an ace bandage. But that night, the pain grew worse. I then went to my primary doctor who told me I sprained my leg and it would feel better. It didn't. In June, I was getting ready for the day when my leg went numb from my knee down to my toes. I have not been able to feel my right lower leg since then.
I have now seen 9 different specialists at different hospitals - Sinai, etc., and no one can find out what is wrong with me. I am only 23. I was planning to move to PA but my leg has held me back.
My doctor sees me every four weeks for my chronic leg pain. She is worried and never saw a case of chronic pain of this multitude before. I have been on several pain meds and taken off due to them not giving me relief. I've been on a new pain med for a while now and a muscle relaxer too. I hope the Botox I'll be getting in July this year will help. I was born with Factor IV Ledien, a blood disorder, Restless Leg Syndrome, and mild Cerebral Palsy which caused my lower legs to be slighly deformed.
The symptoms I had at 10 are now back to haunt me: The tingling, grinding bones, numbness, fire poker pain, and barely able to walk. In the year of 2003, I went to my mother, complaining of all the symptoms I mentioned above. She took me to a kids' hospital in DE where the doctors did all sorts of tests. They told my mom I had arthritis. I always had minor leg problems at school but never like this...until the day in April when my issues returned. Could it be arthritis, an old familiar "friend"?
To cope, I swim weekly in a heated pool at the Merrit Athletic Club. The warm water minimizes the pain but once I get out, the pain comes back. Since I love to swim, I had aqautic therapy twice which failed. All other tests were negative for the following: sciatica, scoilosis, and neuropathy.
I dread going to sleep at night because I never know if this 23-yr old lady is gonna sleep all night or wake up. I get these random attacks of pain down my leg at night and during the day at the best of times. I can only feel the inside of my leg. As soon as the sun sets, the pain in my leg goes from 400°-900°. Lately every time my foot tingles, it's as if I stuck it in an electric socket along with my stil grinding bones and ice cold leg. When these attacks do occur, I know nothing but pure agony until it stops.
The MRI I had of my leg 3/11/16 revealed something disturbing: Mild dysplasia of my right hip and some missing cartillage of my knee.
Being in constant pain for 2 years sucks big time. The reason why I haven't called back to my 10th orthopedic surgeon is due to some personal things going on right now but when the coast is clear, I'll set up an appointment to get help. I am crying watching this due to the pain.
+Samantha Lynn Please consider low-dose naltrexone, email me at info@rsds.org and I can send you articles on LDN
Samantha Lynn Reading your story I was crying because it's like your writing about my life for the past three years right knee pain after a bunch of surgeries it started with super tremendous tenderness, swelling the size of a cantaloupe and also it gets super tight, and the only way to deal with it is putting ice or rubbing lidocaine 4% all over my knee and hopefully that works. And I look funny wearing shorts in the winter. LOL My knee turns beat red like it was outside for 12 hr. With no sunscreen sunburned and my foot goes cold. And I am a barefoot person I hate socks and shoes but yet I wear socks to bed and then it'll subside and I'll take it off. So thank you so much for making me feel like I'm not the only one and it's not all in my head! So now they're thinking of doing a central nerve block and will see how that goes. Good luck to you and again, thank you very much for sharing your story. 🙂
TRY another pain clinic unless you want to wait 5 hours to speak to a non English speaking DR
I have had RSD since 2002 they found mine out with a bone scan have you had that test done yet. I also now have a spinal cord stimulator I've had RSD in my left arm. Like I said 2002 it was a work accident.
@@madhatter2863
my CRPS is recent, it was a workplace fall due to collapsed asphalt so I fell against a granite curb and got four wrist bone fractures (distal radial and ulnar), and metal plate. I also was diagnosed from a triple phase bone scan. It showed blood flow and blood pool different from my other arm/wrist/hand. It was obvious to me that something was very wrong because my hand was swollen and discolored, the skin was shiny, and I could not/cannot fold my fingers normally. And I was still in serious pain after nine weeks.
I can’t stand to even take a shower it is so painful. Pill can’t help
No one understands
Hands feet legs shoulders 😢
Thank you
Unfortunately if you needed an early diagnosis for CRPS in the USA during the pandemic, you'd be very wealthy or just lucky. In 2023 with a diagnosis for anything requiring many different specialists to work together....dream on. It's not likely given what's left is the business model of medicine and pressure on these professionals. Good luck finding a primary physician. Expecting a doctor that can get to know you well enough to treat anything that presents with many complications is impossible in this system. Medical practitioners leaving in drives. Patients just die more. In many cases very painfully and mis understood.
I knew something was not right when I woke up from foot surgery. I had never felt that kind of pain before. It felt as if someone poured gas on my foot and set it on fire. Had I had a meat cleaver and a block, I would of cut my foot off. The wave of burning pain was so intense, I’d go outside with my foot wrapped in a trash bag and stick it in the snow. I didn’t sleep for over 90 hours. My orthopedic doctor thought I was drug seeking. I spent countless hours searching the internet looking for answers. After finding what I thought was going on, I went and saw my family doctor. Who sent me to a pain management doctor who agreed with my self diagnose of CRPS. I’m one of the lucky ones who caught it within a week. I was put of 3,300mg of Gabapentin and after a year on that high dose, my doctor started to slowly lower it, now I’m down to 900mg daily.
makes me want to end my life, 15 months of non stop pain, only God can help me!
CRPS is associated with the malfunction of the autonomic nervous system after trauma, injury. The autonomic nervous system controls your unconscious mind . So your brain thinks that your injury is still in pain when actually my broken wrist was healed but my brain didn’t know. I have some use of my hand at first,first year I could not touch it use it nothing. You must strengthen your central nervous system. I send Light and Love to all.✨🧚✨
I worked as a wilderness boot camp counselor and had an ax thrown at me, crushing my foot. Took over six years to get a diagnosis. I, now disabled, fight daily to combat this. My masters degree is now useless as my mobility disappears.
It has recently spread and become even harder to deal with. I have found some relief with cbd. I’m afraid about how much worse this can get.
Maureen Simpson
Ask you physician about bisphonate infusions. You can get Pamidronate infusions here in the US. My wife had CRPS. We had success with Neridronate infusions in Italy.
Don’t be fooled into thinking CRPS is going to go away on its own. Chances are it will get worse. We have information on Pamidronate and we can share our Italian physicians email and other info on Neridronate. We’d be happy to help. Stay strong and God bless.
I pray you get relief and a healing.
@@gregbisesi9966 Ciao!! I'm in Italy - in Rieti, near Rome. I have severe, chronic 24/7 awake/asleep c.r.p.s. - chronic for over 25 years. Was this doctor really any good? Do you still have his information? Thank you
@@TubeHDR
Yes his name is Dr Andrea Giusti he is a rheumatologist in Genoa. He is a wonderful caring physician, we liked him a lot. He is based at Casa di Cura hospital. The treatment last year cost us just over $4,000 US dollars.
My wife is in remission from CRPS but still has nerve damage in her foot from multiple surgeries and the severe neuropathy from two years of crps.
Dr Giusti’s email is andreagiusti6613@gmail.com. He is usually pretty quick answering his emails. Good luck, I hope the Neridronate will get you into remission from this horrible crippling disease.
Good luck
Greg
@@gregbisesi9966 Although I am located more toward Rieti and due to the economic collapse, Genoa appears impossible for me to reach-- I really Thank you, so very very much for the Treatment Information and Cost -- any information that may help, is a step back from the balcony - You are Awesome! Grazie Mille -- Thank you! Thank you!
I Was just diagnosed with this and other then the pain is that people don't believe you when you tell them about having CRPS. They don't understand what it takes everyday just to function because you are in so much pain. I had foot surgery 1/22 and after having 4 months of PT and not progressing and still on crutches because I'm unable to walk I'm treated like its my fault. I have 2 more PT visits and that it, I can't walk the pain unbearable, I have zero range of motion in my ankle and toes. It's so frustrating and depressing!
Do any of you work? I can’t do belts or button up my own pants.. I forget that there’s a lot that my hand can’t do and every day motions get me still . No meds stim surgery soon . I’m a year in and really ready to just cut it off but was told that could spread it. I’ve lived in severe pain since the age of 12 I fell out of a tree about 80feet I have work my whole life this way n Crps takes my hand and believe it’s already spreading. Been having weird needle pains in my other hand my ears my top lip down n one foot ! This disease has done one thing positive for me!! I 💯 percent accurate about the weather n usually can tell a day or 2 before it rains or snows !! My pain is at its worst on those days I am in Indiana so it’s a constant hot flashes sweating super pain and fight off vomiting . Confusion, sleep deprived the night to day hours are horrible. This has truly put me on my knees changing my life I’m dependent on others now wich has destroyed me. Hopefully stimulator will be my life saver
I live in Florida now had to move because of thw pain
I'm in Sarasota where I fell at work.
I have CRPS from a brain injury sustained in a car accident. The unfortunate thing is that I have gotten the "Super-Whammy" of accompanying disorders. Due to my brain not processing pain signals correctly anymore the pain I experience is whole body (widespread and ferocious!) On too of that I also have narcolepsy, PTSD, and a myriad of depression and anxiety issues. My only salvation, after seeing a procedure happy Dr who did nothing more than exacerbate the pain, was finding a true, caring neurologist who gave me a correct diagnosis. After years on opioids, I felt my life was as being governed by them. Finally had a Medtronic implanted medication infusion pump done and the pain control takes care of itself. I have muscle relaxants and pain medicine in my pump. It has to be filled once a month by Dr and I also have medicine for break through pain. My life is probably as normal as it will get- but it's so tremendously better than it was!!
Thanks for sharing, will look into the drip option.
2004 I had an accident and now it's halftime in a wheelchair. I was an instructor for skiing for disabled kids last time I try to do the I did but I came home I could walk it was so hurting kind of my dream I need to do more. give me tips when you know what to do I'll try pills everything I can get.
Hi how are you doing nowdays, Im suffering from CRPS. Im devastated
Thinking of you all!
So what is early treatment? I’m going on about a year now… started with left calf pain - turned out it was Achilles tendonitis and plantar fasciitis so doc put me in boot then cast totaling 10 weeks. Came out of it and it all began.. around last June. What is early treatment protocol? I live in NJ/PA. Also, I feel like the doc who put me in the cast is responsible bc that was his first line of treatment when my neuromuscular doc said I should have never been out in a boot or cast… this has been the worst year of my life in many ways… would love thoughts!
A physician would be able to determine which treatment works best for you. If you are on Facebook, please send us a message via our Page (facebook.com/rsdsa) so we can send you a list of our recommended physicians in NJ and PA. If you are not on Facebook, email us at info[at]rsds.org.
I got hurt at work on my left arm, shoulder, hip , elbow, hand. Since the insurance has been lagging for almost 2 years. I requested to see a QME doctor. He said I have C. R. P. S.
This thing is not good. But the difference is that I can't feel my left arm from my elbow to my hand at all. It gets severely stuck when I put my hand into fist 👊. It takes over 20 minutes to get back to normal. What can I do? For help
Hello everyone.please tell the experience if somebody visited
Speroclinic Dr katinka fayettevilli Arkansas USA. I saw her vedios on you tub ,she is doing good job.please share if somebody heard or visited there. Actualy my daughter is suffering from CRPS of left foot after getting ankle sprain.Now i do not know what to do and where to go to get treatment.thank you.please reply.
Mines in my hip. I cant lift it up and it affects my balance. I've lost muscle function in my butt and I compensate with my left leg and that side hurts all the time. No one gets it. It's a very lonely condition. I'm tired all the time. Sometime I just wanna chop the damn thing off. It's also in my hand this time so I've lost my grip.
We're so sorry to hear this, Sally. Are you in need of a new physician who can give you relief? Email us at info@rsds.org so we can send you a physicians list for your state.
@@RSDSA that's so nice of you but im in England so I'm not sure you'll be able to help
Hi I am so sorry for your pain I totally understand the burning and being cold to the bone, I get the creepy Crawley up my arm not to mention sweating on one side of your body all the same time and being cold at the same time it's an awful way to feel :( Do you get like that too? I got this terribly disease a week after I got married in 2002 can't even we're my wedding rings on the hand it suppose to be on :( I wish you the best if you need to talk I will listen .
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I got it 1 & 1/2 weeks after a dental implant in lower right jaw. R wrist and hand swelled, turned bright red & was contracted. Couldn’t open my hand. The pain was unbelievable. If I moved wrong I screamed. Otherwise it just throbbed like I’ve never felt before. It went down in about 2 weeks completely. I had Lyme Disease for years and was better until I had a spider bite last summer. I started getting sicker and in pain all over. I think I’ve had it simmering for a while. I researched and found a clinic that has helped people to be free of pain, to walk again and get their lives back. I’m going next month. Thank you to all the doctors who care about people with this disease. We will overcome by God’s grace and mercy! God bless you to every patient in Jesus’ name🙏🏼❤️🩹
God help us all. Please!
I have seen so far over 20 Doctors for a solution and all told me that it is permanent
There is no cure, but there are treatments available to help with the pain. Send us an email at info@rsds.org if you need assistance.
This Syndrom is 😬.
I'm from Germany and we've got no Organisation who can give People like us some advice. Is there any one who got some Informations? What brings the Pain Level down?
👍👍👍👍
I have this - hurts so much - and the AWLFUL CYSTS that comes with it ! WHAT TO DO ? HELP !
Do you need a new physician? Please email us at info@rsds.org.
Hello. Can someone give little more explanation regarding prognosis and chances of not developing full fledged disease? About 5.5 months ago I got injured with glass in top of my wrist. Had tendon repair and sensory nerve repair surgery.Was in splint for 5 months, after taking the splint off doctor sent me home said do home exercises in water. After 2 week still could not move my hand and was swelling there. I was put on physiotherapy and my condition improved but still I m in pain at places in my arm other than injury sometimes, unable to make fist and pinkish to purple coloration occurs whenever I’m out my hand down . I just wonder i revered some of the symptoms ? But it’s really slow and physiotherapy is really painful. Could someone elaborate it more and what are the chances to cure this if I can ?
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: drjoshua.ighalo@gmail.com or contact Dr. through his whats-app: +2349057958723 They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
Do not get scammed by the person that commented on here about an herbalist!
What is the treatment
?????
they say there is no real cure for this! but I have been in contact with this clinic in Italy, they say they have been treating patients for many years now with great results, they have a specific treatment for it. I'm currently in the process of applying as a patient...fingers crossed...
Just diagnosed after I broke my leg & shattered my ankle 4 months ago. It’s in the heel of my foot, it hurts to walk & it throbs if I take a deep breath
We're sorry to hear this, Jayne. Have you found a reliable doctor in your area?
Not always possible for some it's to late have RDS 18 YEARS NOTHING THEY CAN DO ANY MORE
Lmao I do. I’ve had it for 4+ years but since I never had any trauma, doctors couldn’t figure it out and they kept dismissing me and whatnot. I have CRPS in my legs and feet, and it has now spread to my stomach, my mom wouldn’t believe me so I was suffering for a really long time. Being an actor/ singer this was a huge impact on my life cause it stopped me from doing everything I loved and it keeps me in bed 24/7
email me at info@rsds.org and I'll send an excellent blog with some suggestions for non-opioid options, sorry that you've suffered so.
Oh so sad
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I want you to know that I have a niece who suffers from RSD/CRPS. She has had excellent success with a therapy called Calmare or Scrambler therapy. She went from nonfunctioning to near normal. She went to Dr. Meyers in Long Beach, CA. www.meyersmedical.com/ Hope this helps.
I need help before I die no help for 10 years
Do you have a spinalcord stimulator? I have had rsd since 2002 in my left arm the only thing that work was the spinal cord stimulator and medication.
@@madhatter2863 I have it full body and the sad thing about this I haven't gotten the proper care since I had this curse 6 years . My prays go out to you & everyone else with this syndrome
My CRPS has actually improved. Have you tried diet change, small weight loss, antiinflammatory diet, Vitamin C, probiotics, Alphalyproic acid, TENS, warm water therapy (pool), stress reduction, and of course, prayer? Please feel free to reach out to me. I start Ketamine infusions soon. I've heard it radically improves one's life. I'm praying for you Lynn. Lexi
@@lynnbain3543 That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
💜💜
Orange hearts are more appropriate.✌️
Is there a way that any1 here has overcome this